The Hub Blog

The Great Wall Challenge – For CLIC Sargent

Sue — Mon, 17 May 2010 11:31:36 +0000

My daughter had cancer when she was 8 months old she is now 12 so a real good news story!! Each year I try to fundraise to acknowledge our thanks for Sophie and for the support and care we received and continue to receive through our frequent hospital visits.

This year I am doing a package of challenges; Bristol and Bradley Stoke 10k’s, Bristol Half Marathon and the Great Wall of China Challenge.

If you would like to sponsor me, hear more about Sophie’s story or keep up with my training and fundraising endeavours please log on to www.justgiving.com/sue-evans1

Thanks

Sue

A father’s story.

editor — Sun, 24 Jan 2010 11:14:26 +0000

When my son was diagnosed with Leukaemia in 1999 at the age of 15 I was so upset I couldn’t say the word Leukaemia when I telephoned my mother late on the Friday night, after seeing the Consultant urgently the same day at Gloucester Hospital. I rang and I said “He’s got…………..” and then silence, and I couldn’t say the word. I said “He’s got…………..” several times, and then eventually after a long pause I got it out, and she burst into tears.
Because it was the weekend, they couldn’t start his intensive treatment in Bristol until Monday, so we were sent home. I was moving my mother that Saturday out of her flat in Frome, and she was going to live with us until an apartment she had bought was ready. I drove to work and borrowed a van to move her furniture. My other son was helping me. The physical work was a relief because I was so angry I would have knocked down anything that stood in my way. I drove very aggressively in the van, but no one said anything. I think I went back to Frome twice that day, but I can’t really remember.
Once the move was done I can remember sitting on the settee at home, and without uttering a sound, tears were streaming down my cheeks.
We had to take my son to the Bristol Children’s hospital on Sunday evening, and went for a meal at Riverstation restaurant and I ordered Champagne, which lifted everyone’s spirits.
The delay over the weekend nearly cost my son’s life, because his blood counts had become so low by Tuesday that his organs started to shut down and he was dying. I had seen my Grandmother close to death, and now my son was lying as lifeless as she was, with a grey pallor to his skin and breathing shallowly as he lay unconscious.
They gave him an emergency blood transfusion, and quite quickly the pink colour returned to his skin and he woke up and sat up in bed!
I dashed back to work, and when I returned to the hospital next, my son was in the playroom of the children’s ward as he was too young for an adult ward, but also he was too old for a children’s ward. (We still haven’t achieved a dedicated teenage cancer ward in Bristol, despite funding being in place for some time from The Teenage Cancer Trust, but I think we are nearly there now.)
When I was able to see what my son was doing I was completely shocked. It was the most terrifying and startling thing that I have ever witnessed in my life. With the help of the play specialist, a 15 year old boy was sitting, quietly colouring in a paint-by-numbers picture such as a pre-school child would do.
The play specialist took me to one side and calmly explained that it was therapy to help him get over the shock. Unfortunately no help was given to us or his siblings to help get over the trauma, and this is a gaping hole in Cancer Services which needs to be filled urgently.
My son never complained about getting Cancer. Never felt sorry for himself, even when some of the treatment was very painful. He was always very positive. Another boy of similar age, who was diagnosed within a few days of my son, was often in the next bed to us in outpatients, as he had a similar treatment regime, but he wasn’t positive. After general anaesthetics that were required to inject chemotherapy directly into the spinal cord, this teenager would be complaining, and he was sick because he had a drink before the anaesthetic, whereas my son hadn’t had anything at all and was smiling, relieved it was all over. The young boy died quite early on in treatment, and the next bed was usually empty as we waited to go into theatre.
The only thing my son ever asked me was when we were alone together, near to the beginning of treatment, and he said, “What is it like to die?”

Of course I had died several times, so I knew exactly what it was like, and I replied, “Oh its fine. You just go to sleep and don’t wake up. There’s no pain.” (Pink elephant!) “Oh, that’s OK then.” He replied. Throughout his treatment he never once grumbled, or questioned anything he was going through. We did, however, whistle the tune to “The Great Escape” every time we left hospital after a procedure or course of chemotherapy.

Whilst we were going through hell on the ward, we witnessed other parents going through much worse than us. One mother’s child was so disabled by illness she had to be lifted by a machine in and out of bed. She had had so many cannulas inserted into her that the doctors had no veins to get a needle into, and they struggled in vain to get one into her foot while she was suspended in mid-air in a hammock. The doctors gave up, and I can vividly remember the red blood dripping from her foot onto the old, stained lino floor. The dreadful suffering of this child had gone on for years. The wife’s husband had long since abandoned her as she devoted her time and energy to help her sick daughter.
This was the old Bristol Children’s Hospital, (which has now closed and they have built the new one called the Paul O’Gorman building). When they dimmed the lights at night to allow the younger children to sleep, the mice would run up and down the dimly illuminated ward. Racing around the blood spills and other fluids on the floor.
In complete contrast, whilst all this was going on, a disused ward next door was being used by the BBC to film episodes of the drama “Casualty”. We could peer through the door and watch some of the actors, including one of my favourites Claire Goose!
My son would have to receive so much chemotherapy intravenously that his veins couldn’t cope, and therefore he was to have a Hickman line inserted into his chest with a tube going directly into his heart. In children’s paediatrics this is referred to as a wiggly line or just “Mr.Wiggly”! Terminology that also helps teenagers cope with an alarming procedure. I’m sure the thought of having two wigglies was very amusing to him!
As we waited for him to come out of the theatre having had this fitted, the doctor came out and said, “Everything was fine, and it’s ready to use straight away!” This puzzled us because we weren’t really sure how this was to be used, and the Doctor seemed to imply that we would be using it! We were invited to go into the recovery room to see him. When we walked in, he was still unconscious and a young nurse had his head cradled in her lap, and was gently stroking his hair while watching the monitors closely. This extraordinary image of an NHS employee showing exceptional care, affection and dedication to her young patient is one that will never leave me.
We were told by the Professor that one of the side effects of remission induction would be that he would lose his hair. However the days went by and then weeks, and he still had his hair, and just when we thought he wouldn’t lose it he awoke one morning with clumps of hair on his pillow. Over the next few days more and more clumps of hair fell out, and he had a very strange appearance. He is a very good looking boy, and was always very proud of his appearance, so we decided it would be best to take it all off as he would look much better. I shaved his head with an electric razor in the upstairs bathroom. It was the most difficult thing I have ever done in my life. One of our GP’s bought him a designer cap, and he always wore a hat until his hair grew back.
My son came close to death several times over the next few months as intensive chemotherapy killed every cell in his body many times over, before they infused an antidote to stop it killing him. We went agonisingly through each one with him.
On one such occasion I couldn’t stand it anymore, and had to leave the ward for a break. As soon as you walked out of the front door of the hospital it was like walking into a different world. I went into a pub on my own and had a pint, before I went back.
My wife and I played team-tag, looking after him in hospital. Usually only one of us at a time, so we could try and keep our jobs going. Occasionally we both stayed together in the CLIC Sargent funded CLIC House near to the Bristol Children’s Hospital, where we would comfort each other.
One night when it was my shift to look after him I was close to tears when I was saying goodnight, before walking back to the CLIC House. He looked up at me and could see I was upset, and he said, “What’s the matter? Why are you upset?”
We longed for the end of treatment. After three years the end of treatment did come, but he still was classed as in remission. He wasn’t cured. There will always be the likelihood that he could relapse, and he was more at risk of another type of Cancer being diagnosed. Thus began Survivorship, and the Doctors talked in terms of 5 year survival and 10 year survival. The longer the patient was free from Cancer, the better the prospects that he/she would stay in remission. But the end that we had longed for never came. However with other people losing their child, we were extremely lucky to still have ours.
After the end of treatment secondary complications were diagnosed that were so completely unexpected, they were nearly as traumatising as the original illness. In the future individual treatment plans will be developed based on a better understanding of residual disease that will allow modifications to treatment to minimise late effects following chemotherapy.
I was, and still am traumatised by these events, and with time this has become less painful, but I think the trauma will always remain with me.
I would like to thank the late Professor Tony Oakhill, CLIC Sargent and all the NHS staff who helped to save my son’s life.

Gloucestershire Survivorship Project

editor — Tue, 12 Jan 2010 13:30:04 +0000

Stroud Half Marathon

Liam — Thu, 12 Nov 2009 20:43:53 +0000

A collection of 25 family, friends, colleagues and students from Cirencester College took part in the Stroud Half Marathon last weekend, raising money for CLIC Sargent. It was a great day, although very windy and wet, and everyone finished the run. We are aiming to raise £7000, and are heading towards that target with some sponsor money yet to come in. If you would like to sponsor us, please go to: http://www.justgiving.com/liamnolan1

Our full story is in the Stroud News and Journal :

http://swcancerhub.org/link/stroudnewsandjournal.html

3 Peaks Challenge June 2009

Sue — Thu, 22 Oct 2009 12:25:15 +0000

We left on Friday, flying from Bristol to Glasgow. We were a great sight at Bristol airport with our Cancer Research T-shirts on and really started to feel we were actually going to do this after, for most of us, months of planning.

The team has changed a bit since this idea was first conceived, the final line up being Sue Evans, Cathy Meredith (Fagg), Sam Dixon, Clive Jones, Ali Poole (original members), Simon Wood (coerced to join in January), David Powell and Mo Swinscoe (joined in April), Steve Webster (joined last week!!). We have had various training events, the last being in terrible weather on Snowdon in May. As this was mine and others first experience of a mountain climb and the weather forecast for the coming weekend was terrible, we didn’t have high hopes.

We met our guide, Stephen, at Glasgow Airport and set off on the 3 hour drive to Fort William. We stopped en route at Asda to get provisions for the weekend and each bought a weird and wonderful selection of food to sustain us. Its fair to say that our tastes varied from David’s banana and chocolate milkshakes, samosas and Love Hearts; Ali’s beer; to the more traditional, banana’s nuts and enough water and Lucozade Sport to open a small store. We also got the Champagne ready for our celebrations at the end.

Back to the minibus and Roger our driver for the weekend. The ‘mobile palace on wheels’, as it was described in the brochure was a 15 seat Mercedes minibus, new and quite comfortable, unless you wanted to sleep, change clothes, eat or get ruck sacks ready for climbing the 3 highest mountains in Britain. Ali was OK as he bagged /the /seat with leg room and made it his own for the trip! Onward to Fort William, Roger had an interesting attitude to driving, feeling that anyone over 50 should take an annual driving test (endearing himself to his passengers several of whom had passed or were rapidly approaching this golden age), he was also fairly forthright in his opinions on several drivers we met on our initial 3 hour trip and the 6 and 4 hour trips which followed.

We arrived in Fort William at 9pm, hungry and tired and its fair to say a little anxious about the next couple of days. A table had been booked in a local restaurant so we dumped our stuff in the ‘mixed bunk accommodation’ and went out to eat. Fort William was crammed with people, every restaurant and take away was bulging at the seams, we were so glad we had a reservation! Arrived at the restaurant, interesting looking place with bouncers on the door, to find someone had cancelled

22 places and the tables had been given away. So we were back on the streets looking for food, not very happy and starving hungry. After a route march and several failures, we eventually found a Brewer’s Fayre just about to stop serving. 10 of us piled in and quickly ordered before they changed their mind. We were sat on a table adjacent to a family with a boy wearing a shower cap, most odd. Then we went back to the Banks Bunk House to find 2 members of another team didn’t have rooms, we hurried to ours as possession is 9/10ths of the law, every man for himself etc.. Crawled into bed, it was freezing, but eventually fell asleep only to be woken at 1.48 am by the fire alarm (you couldn’t make this up). Sam, Cathy and I didn’t actually manage to make it outside, the boys did, thank goodness it was a false alarm, then they couldn’t switch the alarm off so it kept going intermittently for the next 20 minutes. 5.45 am came around all too soon and we were up, dressed and down for breakfast raring to go (not). there were other teams all up for the same challenge, some looked scarily fit.

At 6.30 we were off to ‘The Ben’, as us climbers like to call it, for a

7 am start. Stephen took charge and got us all straight out of the bus and off up the mountain, no messing with him we discovered. The climb up was beautiful, rugged, ragged, warm, cold, covered in snow and hard work. We reached the top in 2 1/2 hrs., got told off for spending too long faffing about with phone calls, texts and photo shoots and were quickly on our way back down the mountain again. We fairly galloped down the mountain to Stephen’s delight and were back in the minibus at Roger’s tender mercies by 12.30, well ahead of time.

On to Scafell Pike, through some really beautiful scenery. As the drive to Scafell was 6 hours, Roger /had/ to stop to take a 30 minute break en route, because this was beyond our control we were allowed to add 30 mins to the official 24 hrs. allowed for the challenge. The girls made the mistake of needing the loo before we got to Roger’s official stop, as we were desperate Stephen did allow a detour but made it very clear that this was wasting valuable time. We got the message! We spent the 6 hr. journey, eating, trying to sleep, taking on fluids, sorting out blisters and other wardrobe malfunctions, like the sole coming off Steve’s boot (hastily fixed with Super Glue which then saw him through 2 mountains – good stuff). We arrived at Scafell at 6pm and having been given a 30 minute warning to get ready for the off, we were straight out of the minibus, into the loo then off up the second mountain of the day.

The weather was great lovely and summery and the climb started quite gently and there were some lovely views, as we went up the terrain varied hugely from boggy to stony, to craggy rock requiring some climbing skill to a virtual moonscape leading to the summit. A quick turn around this time with barely time for a photo, certainly no time for phone calls and texting and we were off on the decent. Again we made good time going down despite the last hour being in darkness necessitating the use of head torches, which are amazing and give a really good light, luckily. We reached the bottom at 11pm, quick loo stop and back in the bus for the 4 hour journey to Snowdon.

By this time we were all feeling the pressure and were tired and aching, desperate for some sleep, a wash and some clean clothes. Its a good job we were all in the same boat as the body odours despite best quality merino wool climbing attire must have been a bit high, combined with the rubbish we were accumulating from the high carb snacks (including banana

milkshake) we were eating and spilt coffee, which Steve managed to tip all over Clive, the bus was becoming rather unpleasant. Good job we were too tired to notice really. The whole situation was made worse by Simon and Mo’s jokes, really guys you need new/better/funny material. We were accompanied by climbing themed tunes playing on the Ipod, memorably ‘Ain’t no Stopping Us Now’, River Deep Mountain High’, ‘Ain’t no Mountain High Enough and ‘She’ll be Coming Round the Mountain’ which got switched off after a few bars!

We got to Snowdon at 3am. Again we had had a 30 minute warning from our leader Stephen. Today we had some real casualties though, David, Steve and Mo’s knees had stiffened up as had Sam’s hip. We had consumed a shed load of Brufen and other drugs en route, including Ali’s potion bought in America, to try to relieve the various aches and pains. Anyway no hanging around we donned our head torches and were off for the final ascent. We went along the Miners track as its easier terrain initially followed by a steep ascent to join the Pyg Track, the route we had taken before. The climb up was really hard and it really felt as though someone had moved the summit since our previous trip. We all struggled to get to the top and Stephen had to use all his leader’s skills to get us up there. We reached the top in 22 hrs. 30 mins leaving 1 hr. 30 mins for the decent if we were to keep with in the time allowed. We took our last summit photo and again we were off down the mountain. Once we got down the steep bit back onto the Miners Track we were able to really crack on and made fantastic time with all of us completing the Challenge within the 24 hrs. allowed. Some even managed to run the last few miles to the end!

What an achievement, we were all exhausted but elated and went off to a Llanberris greasy spoon for a large full English, or was it Welsh, breakfast and a cup of Champagne. We couldn’t have done this without the support we all gave to each other and the excellent leadership of Stephen from Adventure Cafe, but also the support you have given us through your sponsorship, its great to know we have so many friends out there and that you have wanted to contribute to our cause.

RAF Lyneham August 2009

Liz — Sat, 05 Sep 2009 22:11:52 +0000

I want to be a ......... test pilot!

What's that?

They're going to land!!

Its the Falcons

The Team photo!

Getting to play with water ........ lots of water!

Our own personal visit from the Tornado. It was VERY loud.

Had to try it!!!!!!

Grace’s story

Liz — Mon, 27 Jul 2009 20:21:46 +0000

Please click here to see the PDF file of an article published in Junior magazine 2007.

Grace story – Junior

www.juniormagazine.co.uk

First of all……..

Liz — Mon, 27 Jul 2009 19:45:31 +0000

Here is the first ever Hub blog post!